It has been 4 weeks since Nasir was born. He came into this world a true miracle and is perfect in every way. I am overjoyed that he is here, happy, healthy and growing like crazy. His due date was June 30th and throughout my high-risk pregnancy, it was understood that with so many health issues, surgeries, and not having a rectum or anus, the probability for me to deliver him in a traditional birth was going to be out of the question. I was told by not one, two, or three doctors but EVERY doctor on the team, that it would be the safest for me to have him via c-section and to do it a week before his due date. Although this didn’t coincide with my idea of the “ideal birth plan,” I ONLY cared about having a safe and healthy delivery for me and safe birth for him. It doesn’t matter how our babies enter the world, it only matters that they arrive safely in our arms!

High Risk Pregnancy

Throughout my pregnancy, many of you are aware that I had numerous issues not only with my Crohn’s disease but also that I had to cease all my medications that keep my disease in remission. I also had severe Symphysis Pubis Dysfunction, I had problems with tearing my adhesions and scar tissue from previous abdominal surgeries, I have a Septate Uterus, I had terrible sciatica, I had anemia, I lacked the nutritional support for myself and Nas because I don’t have my large intestine or parts of my small intestine, and I had a herniated ostomy that prolapsed. Because my anatomy isn’t like most, my intestine pooled to one side of my body and my baby was restricting the digestive flow. I also had the general issues of constant heartburn and swelling like a lot of moms-to-be deal with. I tried to be grateful, thankful, happy, joyful, and appreciative for this miracle; and I was. However, I won’t sugar-coat it, I was freaking miserable in my body. I hurt every single day and probably complained to Nate or my mom incessantly EVERY. SINGLE. DAY. all while keeping a smile on my face and forging ahead because I kept telling myself that if this is the sacrifice I have to make to have him here, then I can do this! It was only temporary. My “this too shall pass” mantra was on repeat every moment of every day. I was miserable. But, just to be clear, I would do it ALL over in a heartbeat for this outcome. Nasir is magical…

Things weren’t going well

Over a month before I was to deliver, I was rushed by ambulance from the hospital in La Crosse, Wisconsin up to Mayo Clinic Hospital in Rochester, Minnesota because I had a severe infection and could not keep anything in. I needed IV support and to be monitored because they thought our baby would make an appearance MUCH earlier than we thought. I was so scared. I was alone in the ambulance with the lights and sirens going as we rushed down the highway. I knew Nate was somewhere in a car behind me, my mom also, but being alone and not knowing what would happen was terrifying.

Thankfully, the doctors were able to hold off delivering Nas and just treat the infection. I was hospitalized for about a week before going home, but we were advised that due to the complicated nature of my pregnancy, I would be on “bed rest” (which couldn’t actually be bed rest because I have a history of forming blood clots), so I took it really easy. The doctors recommended I move to temporary housing in Rochester to be closer to the hospital, and I was there a few days before things began to decline again. Read more about our Temporary Transition here.

We couldn’t wait any longer

Although I was advised to hold off on delivering Nasir for as long as possible to give him the best chance for development, the doctors also understood the gravity of my health situation and knew it would be dangerous to wait too long. Not long after my hospitalization, I was still having problems and was not doing well. I woke up on the Wednesday before he was born feeling terrible. My entire body felt like I had one big bruise covering every inch of my skin. EVERYTHING hurt. The slightest touch hurt, and I was swelling up like a balloon. I called, and the doctors said to meet them up at the hospital. My mom took me in because Nate was at work. After a short examination, the doctors suspected that my infection set off a full body flare of my Crohn’s disease. They couldn’t wait any longer. If they didn’t deliver him soon, I might have gone into labor and could have potentially faced a threatening situation where it would be too late to assemble the ENTIRE team of doctors necessary to bring Nasir into this world and keep me safe in the process. Not only was my disease creating a serious health risk, the baby was breech. There was no time left. It would be way too perilous to wait and risk going into labor and a vaginal delivery. Delivery was scheduled immediately for next morning.

I crumbled under the weight of everything and started to cry.

I wanted more time for him to develop. I was scared for him, what if something went wrong, I was worried about the risks, and the surgery and, and, and….and then I took a deep breath.

I called Nate at work.

“You need to come to Rochester right now. They are going to deliver our baby tomorrow morning…”

“Are you serious? Is this for real?”

“Yes, just please come as soon as you can. I need you…”

I don’t know if Nate could even think after that phone call, if he could even concentrate enough to finish his work for the day, or if he was on autopilot all the way up to Rochester. He made it up there by 10 pm that night and we stayed up nearly all night talking. He kept reassuring me the entire time that everything will be OK.

An assembly of sixteen

When Nate and I arrived at the hospital the next day, along with my mom, dad, and my brother, I was ushered into a room immediately. I was a bundle of nervous energy but also ready to meet my baby!!

Shortly after arriving, I was given an IV and little by little the entire assembly of doctors and nurses ushered in team by team to see me. All in all there would be 16 medical staff in the room with us to deliver Nasir. HOLY MACARONI!! 16!!! I was only allowed one other person with me, and of course that was Nate. I was then taken into the OR alone while he was told to get garbed up.

While I was in the OR, it was freezing. More IVs were placed. There were so many lights, so many machines, so many instruments, and so many people. I started to shake uncontrollably. I was given an epidural and a spinal, but the placement was giving me issues. They kept telling me to sit still. I couldn’t stop shaking. I hugged a pillow tightly to my front while they put the needles in my spine. It took forever. At one point, I felt a severe pain in my hip. They hit a nerve and my leg involuntarily shot out and kicked without me doing it. Yeah, this wasn’t working. They moved it a little higher in my spine and it was better.

From there, things moved so fast.

I was put on a table with my arms spread out wide. I had all the IVs in me, they erected a curtain up in front of me. So many people ushered in and out. The anesthesiologists, the surgery team, the OB-GYN team, the colorectal team, the nurses..SO MANY people! That team of 16 was in full action!

I wanted Nate and asked them to check on him. They said he was outside pacing. I wanted him with me, and it wasn’t much longer and he was able to come back into the OR. As soon as he walked in, they started to open me up. The doctors were wonderful about talking me through every step. I had the best cheerleader by my side. Nate was incredible. The anesthesia team was also very supportive and kept encouraging me softly, cheering for me, kept me comfortable, and just made me feel safe. I get choked up just thinking of these moments–moments I wanted to be fully present to remember.

I started to feel a severe pain in my right shoulder and started to get afraid. I told the doctor and they said they had my uterus out. The uterus is connected to the nerves in the shoulder and the pain I was experiencing was called “referred pain.”

He’s here!

It was only moments later when we heard our baby’s tiny cries. Nate started sobbing, I started sobbing. They lifted him over the screen so we could see him. My first thought was how tiny he was. They quickly moved him to the warming table so Nate could trim the cord and the team moved fast to get all the baby stats. Within moments, they brought this tiny naked baby to me and laid him on my chest. I could barely see or breathe I was crying so hard. HE WAS BEAUTIFUL. So precious. My miracle.

It took some time for the surgeons to close me up because they had to clear out scar tissue from former surgeries. They excised my old scar from the time I had the wound vac, and cleaned all of that tissue to make my incision a cleaner closure. It took quite a while, but I wasn’t even paying a moment of attention to that. Instead I was counting toes and fingers, memorizing my little boys face, and through my tears and laughter, I was rejoicing in this miracle.

As I was wheeled into a recovery room, Nate went to tell my family that our baby arrived. We wanted a few minutes alone to relish our first moments as a family of three. We also had an overflow of emotion that was just indescribable and we wanted to bask in the intimacy of sharing these very personal feelings together.

I remember when they lifted our baby over the screen after we heard his cries. I recall looking at him and instantly knowing that his name in my heart would be Nasir, but I didn’t say anything. To be fair, I wanted to hear Nate’s thoughts about his name. As soon as I asked him what our baby’s name should be, he said Nasir! We both felt it. We both knew. His name is Nasir Nathan.

Nasir is a Pakistani/Arabic name that means “Victorious,” and there is no more appropriate name fitting to this little boy than that. After all I have been through, all the health struggles and trials, I look at him and I know it was all for this moment.

When I was diagnosed, it wasn’t clear right away whether I had ulcerative colitis or Crohn’s disease. My disease was so progressive, and I was so sick, that each treatment was like grabbing straws in the hopes that something worked. I prayed to avoid surgery, I prayed to survive.

On the cusp of colon cancer and failing treatment, there was no way to avoid the inevitable. Surgery was the only choice. Well, surgery or quite possibly death. But I was 17 years old and the idea of losing my colon was terrifying. I remember the team of doctors-specialists, surgeons, students, all filing into my hospital room to deliver the news.

I remember my surgeon drawing a picture with a black pen on white paper. “We will cut here, remove this, and make an opening there, create an ostomy out of that…” each scribble demonstrating what he planned to do to me. It was all so abstract and unreal. It was like I was that paper person and it was as simple as drawing a cut across my tummy and pulling my intestine through my abdomen. JUST. LIKE. THAT. But I am flesh and blood and not a series of sketches on paper.

All I knew is that my life would forever be changed. Illness changes everything, losing my colon was collateral damage that this disease was leaving in its path. It was killing me from the inside, and if my colon wasn’t removed, then there was not much hope for a future. I prayed to just survive.

Go ahead then, take it out.

Surgery was scheduled, my Living Will intentions were made, I signed the papers and cried when they wheeled me away from my parents, holding my mom’s hand until I couldn’t anymore. Until I had to let go… It’s so hard to describe that fear of the unknown. I was sick. Not just sick but deathly ill. If this was my chance at survival, would I really survive? I prayed to live through surgery. I prayed to survive.

I survived the surgery, but I was left with a body that was so unrecognizable to me. Cuts across my abdomen, part of my intestine on the outside, an abnormal anatomy that was hard to comprehend when I was just a teenager. Actually, no matter how old you are, this is something so incomprehensible. Who goes to the bathroom in a bag? Who lives this way? How do I live my life going forward? I am just a kid. Why me? The litany of unending questions each one more palpable than the last. I prayed to survive. Now how do I do that?

That was 10 years and more than a dozen surgeries ago. That was 10 years and more than 100 hospital stays ago. That was 10 years and 1,000 procedures ago. That was 10 years and a lifetime ago. I will never forget that scared young girl. Now, 10 years later, although I am still in a battle with this disease that has finally been diagnosed as Crohn’s disease, I am stronger and I am a survivor. Today, I live with a permanent ileostomy and a permanent positive attitude. I survived. 10 years. I survived.